Navigating Death with a child with Autism

Dealing with the death of a loved one is difficult and heart-wrenching.  No question.  Dealing with a child with autism who has just lost a loved one  - perhaps even harder. 

When my beloved father-in-law passed recently, it was a learning experience for all of us.  I had never lost anyone that very close to me and I had never had to teach children about death. 

My kids were very close to their grandfather and he had always made the effort to come and stay close to them for at least 4 months out of the year…every year since they were born….even though he lived far away.  When he arrived at the door, all three kids came running and shouting “Poppa Jay!!! Poppa Jay!! You are here!”  Then they proceeded to bombard him with the day’s news.  (I can assure you I don’t get that kind of greeting.)  He loved them dearly and cherished every moment with them.  And the feeling was mutual.

For a few months prior to his death, we had a feeling that it was coming so I read the kids books about death.  Books about what happens at a funeral.  Books about how people are sad after someone dies.  Books about how people cross over and you can no longer see them, but they will always be with you.  A great one that I highly recommend is called “Waterbugs and Dragonflies.”

When my husband sat the kids down to tell them of his passing, Marley simply got up and walked away.  She said, “No…don’t tell me this.”  And off she went to listen to her music. 

We gave her some time to process it and then revisited her about a half hour later.  We wanted to know if she was okay and if she had any questions.  She said, “yes, I’m okay.  No, I don’t have any questions.”  Then off she went again to be by herself. 

My husband had to leave town to plan for the funeral and I was left with grieving children.  I worried and wondered how they would handle all this.  I knew it was going to be hard but I had no idea how my oldest daughter would handle this.  The perceived notion is that kids with autism don’t feel emotion…but I know differently.  In fact, I am afraid that she sometimes feels too deeply. 

My neurotypical seven year old had the expected reaction to his death.  Hours of crying and sobbing and lots of questions.  However, I was beginning to wonder if my oldest with autism was even processing this information. 

My answer came the next night.  She had been ornery and arguing with her sister for no reason.  I left to put their little brother to bed and when I came back into their bedroom, I found her quietly sobbing on her bed.  Her little shoulders shaking…her eyes wet with tears.  When I asked her what was wrong, she said “I am going to do a magic spell to make Poppa Jay alive again.”  Then she waved her pretend magic wand and said a little chant to try and bring him back.   Then she said, “Please make Skylar stop being so sad.”  It was breaking her heart to see her little sister so sad.  

My eyes welled with tears because I had never seen her react this way.  First of all, she was upset on another’s behalf.  Typically, Marley can see me crying and not even realize that I am crying.  Secondly, I had only seen her have outbursts…never quiet weeping before.  Ever.  I sat with both girls for over an hour while they cried themselves to sleep.

When it came time for services, Marley refused to go.  There was a “party” after the services for family and friends to gather.  We tried coaxing Marley to go but she threw an all out fit at the gathering and my parents had to usher her out.  She could not even be around the idea of his passing.

About a week later, I found Marley on the floor with the book "Today I feel Silly & other moods that make my day" by Jamie Lee Curtis. She was on the "sad" page & was weeping very quietly. She said "this is how I feel because I want to see Poppa Jay again. He liked me and I miss him. I don't want him to be gone. I want to be able to see him."

She was finally processing it for herself.  Realizing she wouldn’t see him again – here on earth anyway.  So, Marley, Skylar & I started talking about all things that we loved about him and that he can still hear us.  They can talk to him anytime they want to….and he will listen.  He will be there looking out for them from heaven. 

That night, as my girls were preparing for bed, I walked into their bedroom to find them with the curtain pulled back and saying out the window…

“Good Night Poppa Jay. 

(Blowing kisses)  We hope you can catch these up in heaven. 

We love you.”

Now, when we say goodnight to each other, we also say goodnight to Poppa Jay.  Because he is listening.  And watching out for my kids.   They may not be able to run and greet him at the door anymore but he will always hold a very special place in their hearts.  And mine.  And my daughter with autism is finally processing it in her own way.